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Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do not recommend ATP supplements. They are mostly placebo, at least as energy providers. You could not eat enough to make a difference. The total weight of ATP made by the body in a day exceeds your body weight. Its really the same molecules made over and over and over, recycled endlessly. Now adding ATP to increase that pool might have some effect, but its not because it provides energy but because it might increase your metabolite pool, which might provide more energy turnover if a low activated phosphate pool is part of your problem.
 
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Mij

Senior Member
Messages
2,353
This is what would happen to me with ribose. It gave me more energy and I was able to do more but I would do too much and crash. It's very hard to stay within limits when limits are set so low even with some energy help with ribose.

I was always concerned that ribose was helping one part of my ME but accelerating another part of my ME negatively. Not sure though.

I'm suspecting that COQ10 supplementation is helping with autonomic dysfunction and not necessarily increasing energy production.

It may feel that way though, but when you think you can do more it ends up not being so.

I stopped taking it because I feel it's having a negative effect now. I dont' need anymore.
 

Justin30

Senior Member
Messages
1,065
@Kati do you mean why do the Mitochondria fail? Or why does the process get interupted?

Do you think more needs to be uncovered?
 

Kati

Patient in training
Messages
5,497
@Kati do you mean why do the Mitochondria fail? Or why does the process get interupted?

Do you think more needs to be uncovered?
Yes, finding out why this is happening in our bodies. Are there genetic predispositions? Are there pathogens causing this to happen and perpetuating the pathology?

This is important to know to prevent disease from happening in people and in finding treatments that work.
 

A.B.

Senior Member
Messages
3,780
@Rose49

This paper seems very relevant to what Ron is doing.

In silico analysis of exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract
Post-exertional malaise is commonly observed in patients with myalgic encephalomyelitis/chronic fatigue syndrome, but its mechanism is not yet well understood. A reduced capacity for mitochondrial ATP synthesis is associated with the pathogenesis of CFS and is suspected to be a major contribution to exercise intolerance in CFS patients. To demonstrate the connection between a reduced mitochondrial capacity and exercise intolerance, we present a model which simulates metabolite dynamics in skeletal muscles during exercise and recovery. CFS simulations exhibit critically low levels of ATP, where an increased rate of cell death would be expected. To stabilize the energy supply at low ATP concentrations the total adenine nucleotide pool is reduced substantially causing a prolonged recovery time even without consideration of other factors, such as immunological dysregulations and oxidative stress. Repeated exercises worsen this situation considerably. Furthermore, CFS simulations exhibited an increased acidosis and lactate accumulation consistent with experimental observations.

http://www.sciencedirect.com/science/article/pii/S0301462215000630
 

Justin30

Senior Member
Messages
1,065
Yes, finding out why this is happening in our bodies. Are there genetic predispositions? Are there pathogens causing this to happen and perpetuating the pathology?

This is important to know to prevent disease from happening in people and in finding treatments that work.

I agree. Its been suggested that for example the one coverion that was being hindered is that LPS blocks the coversion of tyrosine to seratonin.

I want to know the why as well.

What is it in the infectious or autoimmune trigger that causes thi. the CDR makes sense and for me Naviaux Therory or part of it:

When the CDR persists abnormally, whole body metabolism and the gut microbiome are disturbed, the collective performance of multiple organ systems is impaired, behavior is changed, and chronic disease results. Metabolic memory of past stress encounters is stored in the form of altered mitochondrial and cellular macromolecule content, resulting in an increase in functional reserve capacity through a process known as mitocellular hormesis. The systemic form of the CDR, and its magnified form, the purinergic life-threat response (PLTR), are under direct control by ancient pathways in the brain that are ultimately coordinated by centers in the brainstem. Chemosensory integration of whole body metabolism occurs in the brainstem and is a prerequisite for normal brain, motor, vestibular, sensory, social, and speech development.

I want to know if this is permanent damage caused by the infection or a switch triggered in the brainstem.

I also want to know about the genetics and payhology.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Its been suggested that for example the one coverion that was being hindered is that LPS blocks the coversion of tyrosine to seratonin.

LPS cause so many issues, though. And anti-serotonin antibodies were found in 1/3 of ME patients in one small study; that could be part of the reason why sometimes blood serotonin values are low in ME.

-J
 

Justin30

Senior Member
Messages
1,065
Too many people I know have family members with ME. There is definitely an element of genetics at play.

-J

Couldnt it be each person was exposed to a pathogen like Lyme or herpes viruses early on as well?

If its truly a Mito disease then genetics may play a role.

It all has an infectious trigger though.

I know if a whole family infected with mycoplasma it didnt have any signs then one by one over the years each person developed something different.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Couldnt it be each person was exposed to a pathogen like Lyme or herpes viruses early on as well?

If its truly a Mito disease then genetics may play a role.

It all has an infectious trigger though.

I know if a whole family infected with mycoplasma it didnt have any signs then one by one over the years each person developed something different.

That's interesting. However, every woman in my family was hit around age 30. It's hard not to go to a genetics-influenced conclusion.

I do feel the illness needs that 'straw that breaks the'... mitochondria or immune system in the form of a trauma (and I don't necessarily mean an emotional one -- a severe physical injury or a serious immune challenge would do.)
 

Justin30

Senior Member
Messages
1,065
That's interesting. However, every woman in my family was hit around age 30. It's hard not to go to a genetics-influenced conclusion.

I do feel the illness needs that 'straw that breaks the'... mitochondria or immune system in the form of a trauma (and I don't necessarily mean an emotional one -- a severe physical injury or a serious immune challenge would do.)

I remember you mentioning about your family. But did they all get Lyme?

Lyme can get passed from mother to child supposedly.

I have heard of rare cases of family connections but not common. I have a huge family and no one had ME although there is a a 1 cousins with autoimmune diseases.

We have one nephew that has a Mito disease.

I am being tested for them I think tuesday....so..

I dont know.

What I do think is that its not one disease though in all forms it has a major implication on the mitochondria.

I guess what I want to know is does the damage happen to the brain or other organs or does autoimmuntiy eventually take over.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
And yeah, it costs me about $70 / month to do.
Powder city has it. It would cost $25 for 800mg for 31 days. They always have a 10% off coupon as well. The only drawback is its just powder so you have to weigh it every day or fill capsules once every 3 months :rofl:
 

Mij

Senior Member
Messages
2,353
@JaimeS high amounts cause muscle breakdown? That can't be good?

Dr. Kendall's experience as well as her clinical research suggests several general findings about use of CoQ10 in Mito patients.

  1. Use of CoQ10 does increase blood levels in patients, and the Tischon brand does appear to be better absorbed
  2. Most patients reported an improvement in muscle and fatigue related symptoms while using CoQ10; however, higher dosing did not necessarily translate into clinical improvements.
  3. Symptom improvement may take 4-6 weeks or longer of CoQ10 use.
  4. High dose CoQ10 actually caused muscle-breakdown (as evidenced by increased CPK blood levels) in 10-20% of patients. CPK levels returned to normal when the CoQ10 dose was lowered
As a result, Dr. Kendall suggests that when using CoQ10 to treat mitochondrial disease symptoms, "more is not necessarily better". Patients showed mild-moderate improvements even while on a moderate dose (specifically, 20 mg/kg/day in children, and 1000-2000 mg/day in adults). In addition, increased blood levels of CoQ10 do not necessarily correlate with increased symptom relief.
 

Mij

Senior Member
Messages
2,353
@Justin30

JaimeS and SOC experienced benefits from those high dosages.

I took 100mg/day for a couple of years off and on, but didn't feel any difference, when I increased my dose to 300mg/day I started feeling a better recovery from over doing. But after one year or so at that dose I find I'm feeling I don't need it. It's hard to explain but since I stopped taking it I feel over all ok again.